NCARDRS Congenital Condition Official Statistics Report, 2023

This report is the National Congenital Condition and Rare Disease Registration Service’s (NCARDRS) ninth report on congenital conditions and the sixth report describing national data for England. It describes the number of babies born between 1 January and 31 December 2023 with one or more congenital conditions. Additionally, counts and rates for all previous years with national registration coverage (2018 - 2022) have been updated and restated in this report and supplied in accompanying spreadsheets.

The report is a vital resource for commissioners and providers of healthcare involved in the diagnosis and management of babies with congenital conditions. It also provides high-quality data for researchers and those seeking detailed information about congenital condition prevalence in England. This annual report will also be of interest to healthcare professionals involved in the direct care of patients, patient groups and third-sector organisations. 

Congenital conditions are defined as being present at birth, likely originating before birth, and include structural and  genomic conditions (including chromosomal and single-gene disorders). Data are collected broadly in accordance with definitions and guidelines of the European Surveillance of Congenital Anomalies (EUROCAT). Congenital conditions are coded using the International Classification of Disease version 10 (ICD-10) with British Paediatric Association (BPA) extension, which gives supplementary one-digit extensions to ICD-10 codes to allow greater specificity of coding. Classification of conditions into similar groups for reporting is also conducted broadly according to EUROCAT guidance, with some additions to subgroups to increase granularity. For more information about data collection, definitions and clinical coding see section 2 of the Technical Details and the Condition Group Inclusion ICD-10 list documents that accompany this report. 

Consistent with international practice on prevalence reporting, congenital conditions in the following categories are included in this report: 

• live births 

• stillbirths 

• late miscarriages between 20-23 completed weeks of gestation 

• terminations at any gestation 

• where the pregnancy outcome is not known, but all other information required is present 

In this report,  baby/babies is used throughout to refer to all pregnancy outcomes; live births, stillbirths, late miscarriages between 20-23 completed weeks of gestation, terminations at any gestation regardless of their civil registration status and unknown pregnancy outcome.

Throughout this report we use the terms ‘woman’ and ‘women’ to refer to those who are pregnant, or who have given birth. We acknowledge that not all people who are pregnant or give birth identify as women.

The multi-source approach to data collection in NCARDRS is dependent on the dedication of healthcare staff in a range of settings including maternity units, neonatal units, diagnostic departments and genomic laboratory hubs. This collaborative approach enables high ascertainment and completeness of data, ensures consistency and standardisation across the country and has been key to the delivery of national coverage. It is thanks to these notifying healthcare professionals that this crucial, high-quality information is available for clinicians, researchers, patients, and their families. More information about the data collection process can be found in the accompanying Technical Details document.